ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: DHJ on April 09, 2010, 10:08:43 am
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Hi Fellow ANs Just heard from Dr. McKennas nurse today. Wednesdays MRI shows no Growth (Yay) so I continue to WW my 2.4cm by 2.0 cm AN. My tumor seems to be larger than most of my fellow WW but Dr. McKenna does not seem alarmed. I am 55 with hearing loss and minor balance issues and continue to work and play.
Is there anyone else in the WW group with a AN tihs size. IT has increased approx 4mm since IT was found 2.5 yrs ago. When do I treat IT. Peace Dave
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Everyone is different, but the smaller they are when they are removed the less problems you have....so I have been told. Mine was 3.5 cm and I wish it had been found and removed when it was smaller. I would probably get a second opinion on what course to take and really weigh your options.
Brenda
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Although I am not a W&Wer, my thinking would be that when your symptoms become a significant issue, it would be time to act. At 2.4cm you are getting closer to the cut-off for options of radiation (generally in the 3cm range) so that would be something to consider, as well ..... if you are thinking about radiation.
Congratulations on at least a stable tumor now ...... it could stay that way a long time.
Best wishes. Clarice
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Hi Dave..
Re my own personal experience...I was diagnosed at age 58 with a 2.5cm AN over 8 years ago since when I have been in W & W mode and my MRI scan in 2009 indicated the size of the AN had reduced to 1.5cm over the ensuing years. I am presently awaiting the result of my most recent scan and I remain optimistic.
Having due regard to the fact that your present symptoms are limited to diminished hearing on the affected side and minor balance issues, my advice would be to monitor the situation via regular MRI scans and if there is no further increase in the size and no escalation of your symptoms then, should your consultant be in agreeance, consider continuing in W & W if indeed that is what you would wish to do.
Regards
Derek
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I agree with Clarice and Derek...might not be a bad idea to get a second opinion and with the MRI proof over the last 2.5 yrs they should be able to give you an honest opinion. Again, if your symptoms are getting in the way of your life it might be time, but it sounds like you are still able to do your activities...
Take Care,
Liz
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Hi Dave - I see from your profile that we aren't too far from each other - we lived on Cape Cod for 26 years and now are snowbirds returning to the Cape for the summer after spending the winter in Florida (not too far from the Red Sox spring training camp).
I've been a W&W patient for 8-1/2 years with a 9th cranial nerve schwannoma - sort of like an acoustic neuroma but on the 9th nerve rather than the 8th. My first MRI was in 2001 after a bad headache which turned out to be blood pressure related but instead I heard - "you've got a brain tumor" :o It first measured 9 mm but I was told on second opinion by a neuroradiologist that it was a tad larger. During the past almost 9 years, it has changed by only 5 mm (up to 14 mm) with no symptoms although lately I have been a little more lightheaded and dizzy but it's a bad allergy year and I'm hoping that's my situation.
I would go more with my symptoms than the size of the tumor and have already decided if/when anything needs to be done, that I will have radiosurgery - probably Cyberknife at the Beth Israel.
Good luck and keep us posted.
Sheryl
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I have 2.7 cm AN and have been on W&W for 1 year. No growth on 3 MRI's , no symptoms except decreased hearing (still > 90 % good).
New hearing test shows same as year ago except one point less on High frequency @4000 mega hertz.
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Thanks for sharing you AN experiences. It is comforting to know that I am not alone waiting on a 2.4 AN. This week I have a appointment with Dr. Leoffler at MGH to discuss Proton Beam treatment and plan to explore Cyber Knife.Any suggestions? You would think that after 2.5 yrs I might have a plan but life goes on and I keep waiting and watching.Not such a bad thing.I guess. Peace Dave
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Wow - this is all still so new to me. I have only seen one surgeon and was told I am definitely not a candidate for watch and wait....the tumor is not large, but is pushing into my brainstem.
My worst symptoms are hearing loss and tinnitus, but there are scary other things happening with facial weakness and dizziness...but I didn't consider that maybe the next set of doctors to review this thing might possibly suggest that I watch and wait.
There is so much to learn.
thanks,
Nancy
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Hi Dave,
Congrats, I also am seeing Dr. McKenna and am W&W but my is small, so do you get to wait another year? Do you have any symptoms?
Keep in touch and best wishes,
LisaP ;D
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Hi All Just got the OK from Dr. Leoffler for Proton treatment at MGH. Both he and Dr. Mckenna seem to think that I can wait another year for my next MRI but also would support treatment now or if I have more symptoms. Current symptoms include tinnitus,left sided hearing loss and some balance issues, all of which are managable..So I think that I will say my prayers and wait another year. I GUESS. Thank you for your support and may you all find peace and happiness. Dave
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I guess position matters a lot. Mine is only medium sized, but is pushing into my brainstem. I've been told I should not wait for long by several doctors.
Maybe that's the reason some people can wait and some can't. I'm still learning
Nancy
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Everyone of our ANs are different. Looking at pics of mine clearly show that IT is up against my brainstem but not compessing the brain. There is no DENT in my brain yet. So there it sits and I continue to wait and watch and live. Peace Dave
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Hi Dave,
Mine is 2.0 cm and I will find out on May 5/2010 if it grew or not. Don't know if I can continiue on W & W. I am more confused now than before.
Vivian
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Hi Vivian In the last 2.5 yrs I have convinced myself ,through research,that Radiation,Surgery and Waiting and Watching are my best options but the Docs don't think that I should do all 3 at once. I remain very confused but thankful to have options. Some how we will figure this out. Best wishes Dave
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I am convinced Watch and Wait is stressful
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Hi Vivian In the last 2.5 yrs I have convinced myself ,through research,that Radiation,Surgery and Waiting and Watching are my best options but the Docs don't think that I should do all 3 at once. I remain very confused but thankful to have options. Some how we will figure this out. Best wishes Dave
Too funny, yet not funny... this can be so confusing and probably the hardest part of the process is deciding which treatment is the best for you...no one can tell you which. I was in your shoes with a 1.5cm AN, I don't wish that torment on anyone, but you have all of our experiences to use as a sounding board!
Take care,
Liz
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Wait and Watch is definitely stressful and so are my 2 teenagers. I am now on high blood pressure meds and occasional Zynax when I can't deal with the tinnitus.Yoga and exercise are helpful. peace Dave
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I am convinced Watch and Wait is stressful
Hi Rivergirl...
The aspect of mental stress with relevance to being in the 'watch & wait' mode is merely a state of mind that you can alleviate if you pause and fully assess the available treatment options which are 1) excision 2) stereotactic radiosurgery or 3) conservative management (watch & wait) should your neuro consultant agree with this latter course of action.
What you must fully appreciate is that whatever course of treatment you ultimately decide upon, you will have to continue having annual MRI scans for the rest of your life in order that you can be certain that there is no regrowth of the tumour occurring therefore in effect, whatever treatment choice you make you will always be in 'watch & wait'.
It therefore follows that in embarking upon the 'watch & wait' treament mode you are in fact under no additional stress and viewed logically, you could say that you are under less stress because you have not subjected yourself to either of the other available treatment options which of course do also carry an element of risk.
My personal advice based upon 8 years+ in 'watch & wait' is to carry on in that mode for as long as it is possible for you to do so notwithstanding that the size of your AN is suitable for conservative management and your neuro consultant is in full agreement wth that intended course of action.
Regards
Derek
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Derek - great post. I guess, though, that there are some people who will always be on "W&W" even after surgical excision or radiosurgery. For that matter, there are those who are on "W&W" for everything and anything - LOL!!
Following close behind or in front of you (schwannoma found November, 2001),
Sheryl
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Thanks Derek Great perspective and pep talk. I needed that. peace Dave
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Hi Derek,
That was great! I think that's what we all need to hear from time time. It definitely puts things in perspective in our confused llittle alien minds.
Thanks.